In the last post, Mark indicated that he had gone to 45 mg. of Prednisone a day. Unfortunately, it didn't go well. His digestive tract was still being attacked by his immune system. When he went back to 50 mg, he was okay. But, he needs to get off of these steroids! Dr. Urba ordered an infusion of infliximab, brand name Remicade, to reduce inflammation in the bowels. Wednesday, the 8th, Mark had the infusion and so far, it seems to be working. He is now at 40 mg./day and doing well. We hope that he will continue going down 5 mg. every 3-5 days.
Besides causing major fatigue, another side effect of Prednisone is changes in the shape or location of body fat, especially in the neck and abdomen. He's not particularly fond of his thick neck and belly, but hey, it could be much worse! :)
Good news, we have a new grandson! Mark Daniel Hornibrook was born on the 8th of January (his mother's birthday), the 8th child of Michael & Heather, at 8:05 am, weighting 8 lbs. almost 8 oz. He is our 18th grandchild. How's that for stats?!!
Thursday, January 16, 2020
Friday, January 3, 2020
Gradual Progress Continues...
The daily dose of Prednisone has gradually dropped to 45 mg. a day (which is still considered a high dose). The goal is to get to 10 mg or less, then transition to hydro-cortisone which will be for maintenance as my body will no longer produce needed cortisol. While on this high dose of steroids I have been very fatigued, and can only do so much in a day before I entirely tire out. One to three naps a day has become my new normal -- and that is highly unusual for me! If I am standing or moving I am wearing down, if I sit I can maintain, and if I am laying down I am regenerating. Occasionally, there is some nausea, which usually goes away with eating or resting.
Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.
Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.
Thank you for your love, prayers and good thoughts.
Today we meet with Dr. Sarah Hopkins, an endocrinologist. She, too, is anxious to get me off of the high dose Prednisone but recognizes the need to control the immune system attacks on my organs. One of the nurses taught us how to administer emergency steroids, if I ever can't keep the pills down or if my body needs more due to trauma. Evidently, the body needs a certain amount all the time or it will fail. She taught us how to fill the syringe and then just stab the needle into the leg or arm, push in the steroid and pull it out. I am sure that will be fun, if I ever need it:-). So now, when we travel we always need to carry a syringe, small vial of steroids and a note explaining to security personal why we are carrying them.
Isn't life fun;-). We are so glad to be here and soon will be celebrating our eighth year together after the initial cancer diagnosis of less than a year to live (in reality the doctor thought 3 months). We have been so blessed and are grateful every day, for another day together.
Thank you for your love, prayers and good thoughts.
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